Days that Count: Reflections on Advent

It’s the first week of December, which means I’ve broken out the red dining room tablecloth, I’m scolding the kittens to stop chewing the Christmas tree fourteen times a day, and each morning I clap my hands with delight to see what sweet scene is behind the numbered door on this year’s advent calendar.

Festive kitty!

I grew up with an advent calendar and an Advent wreath. Lighting the candles in the wreath was a family religious ritual, accompanied by biblical readings each Sunday that reflected on hope, peace, joy, and love. We began the cycle each year with the first Sunday in Advent, as designated by the liturgical calendar.

Our advent calendar, however, always began each year on December 1st. It consisted of a piece of plywood covered in gold foil wrapping paper, with 24 lidded boxes of all shapes and sizes–each wrapped in a different festive paper–affixed to the board. I thought it was beautiful. Each year my mother filled the boxes with small treats for my brother Todd and me, then hung the calendar on the wall in the den like a big colorful painting. The lid of each box was numbered with gold stick-on numerals, and each year we switched who opened odds and who opened evens.

There were a few boxes whose contents was predictable. A tall, flat box, number 11 as I recall, always had a funny black poodle card in it, as not much else would fit the box. Number 24 always contained a small nativity that we would set up on the box’s fold-down lid in honor of Christmas Eve. Some of the boxes would reveal trinkets we already owned, pulled from a cabinet or the Christmas box. But a few of them always held new items: a tiny Snoopy notepad with even tinier colored pencils, an action figure, a tube of lip gloss. Most times we opened the day’s box before we headed out to catch the bus for school, and even on the days when it was my brother’s turn, the anticipation and the surprise made for a pleasurable start to the day.

The pleasure of that daily ritual has stuck with me, and I have sought to recreate it for others and myself numerous times over the years. When I lived in Germany as an exchange student, the Christmas I’d just turned 17, my host sister Kristin and I made an advent calendar for my German host mama: I drew a snowy village scene, and we wrapped up tiny ornaments, sweets, and perfume samples and tied them onto the bottom of picture with ribbon. My host mama made us each a calendar, too, and my mother back home in Georgia created and sent an advent calendar for my entire German family. My host parents, sister, brother, and I–and even the family dog Lola–took turns opening those packages, which my host mama had affixed to our cellar door. My mother and I have often traded assembling or making advent calendars for one another in the past; my best effort was a series of tiny woolen ornaments that told the story of a little girl searching for the meaning of the season, which Mom still puts out each year.

Steve, sensing my fondness for the ritual, has gifted me a lovely 3D paper calendar–birds last year, and kitties this year–for each of my last two birthdays. But until this year, it had been quite a while since I’d made an advent calendar for anyone. This year I was inspired to create calendars for my three favorite guys. Our grown sons can’t be with us this holiday due to the pandemic and my high-risk status, so I wanted to do something special for them. I can’t say much about their calendars without spoiling surprises to come, but I will say I think had as much fun brainstorming with Steve, searching out items, and putting their calendars together as the boys will opening them! It’s also had the added benefit that as they open a treat each day, we exchange messages. I thought hubby Steve needed a calendar, too, so I spent a few days designing and painting a “happy memories” calendar for him, based in a snowy mountain scene. I got to think about all those memories as I made the calendar, and now I enjoy watching him open his calendar’s entry each day as much as I enjoy finding the cute critters in the calendar he gifted me.

So what is it about advent calendars that captivates me so? And why, this year of all years, did I feel especially compelled to share their joys with others?

It’s been a hard year. I mean, 2020, right? Global pandemic and the accompanying illness and economic woes, forest fires, hurricanes, fractious political climate and elections. Personally, I’ve been in some form of cancer treatment (or on pause, not knowing for six weeks if they were going to find something that worked) since December 26th of last year. Fighting cancer and being immune-compromised in the era of Covid feels like mortal threat on top of mortal threat, and it’s wearying to have part of your brain and body perpetually in survival mode. And so many holiday rituals and traditions that usually bring me joy–walking the neighborhood Parlour Tour of homes with Steve, baking cookies with my mom or the boys, spending an evening shopping and putting outfits together for a local underprivileged child, attending an ugly sweater party with friends–are unavailable, unsafe.

But advent calendars are still possible. And while some of my good feeling about them derives from nostalgia, no doubt, hearkening back to those childhood mornings of little delights, I think there’s more to it than that. Advent calendars–in secular as well as religious form–offer me, us, something that we need in this upside-down, topsy-turvy year. Advent calendars are a lesson in appreciating this moment and its (often literally) small beauties, even as they are also a lesson in waiting. They encourage a daily practice of being present, finding a moment of pleasure, taking a moment to pause and appreciate the now. But they’re also about anticipation, faith that the days will roll forward, that even as darkness falls earlier and stays longer, the light will eventually return. For me they are also about fostering relationships and showing love. When I assemble or create a calendar for someone, I think of them throughout the process, and I hope some small part of me and my affection for the recipient is present each day when they open that day’s box or envelope or card.

And, of course, there is the wonder of surprise, even in miniature: What is behind this little door? What will I discover today? Wonder, love, being present, and faith in the future: all held in a small numbered box, or found behind a tiny paper flap. That’s the kind of gift we can all use right now, the kind of gift I’m thrilled to receive and, given the chance, even happier to give.

Last year’s bird calendar, which is getting a 2020 reprise!

The Lay of the Land, Autumn 2020

Hello, friends! It’s been a while. There’s much to tell you, so I’ll jump right in. Lots of wonderful things have happened since I last posted in 2017, but I am sorry to report I’ve had not one but two recurrences since then. We discovered the first one in December of 2018, in lymph nodes just under my upper port scar by my right collar bone. I’d actually found a bump in July of that year and thought (hoped) it scar tissue, then asked my GP about it in September. She ordered an x-ray (what I needed was an ultrasound, but I didn’t know that) and said all was fine. It wasn’t until my December oncology check-in that I had an ultrasound and surgical biopsy, and I re-entered treatment from January to May 2019.

At Stirling Castle in Scotland, July 2019

My husband Steve and I took a wonderful trip to Ocracoke Island in late May 2019 and had an amazing adventure in Scotland in July. In late October 2019 a small rash appeared just above the crease in my left armpit, and I started having issues with lymphedema again. A biopsy in late November confirmed that the cancer had metastasized to the lymphatics of my skin, and I re-entered treatment the day after Christmas, December 2019.

I wrote about the first recurrence on a Caring Bridge site; I was teaching and working through daily radiation, and I wanted to be able to give updates without feeling like I had to be “writerly.” If you are interested in the details of that time, please look me up there. When the cancer returned again late last year, I was so overwhelmed and sad that all I could muster was writing in my journal, for myself. Honestly, I think I was tired of this being the story I had to tell. To complicate matters, a couple of months into treatment (a combo of immunotherapy and Abraxane, a new form of Taxol), along came the coronavirus. There’s been a lot to process, and it’s only been in the past few weeks I’ve felt able and desirous of opening that process back up to others. I hope sharing my story is helpful, especially now that so many are faced with health challenges and the deep uncertainties they bring. So, here we are.

Back in the ring

A recap of this latest round: as the coronavirus pandemic intensified in the spring, we discovered through a CT scan on April 15th that the immunotherapy I’d been on since late December wasn’t working as well as it needed to; the cancer had spread to a few additional lymph nodes. That was a big blow. I received no treatment for several weeks while we waited on some test results that could give us insight into other treatment options. One of the hardest parts about the current recurrence is that, as my oncologist says, we have a front-row seat: with the cancer being in my skin, I could see it, while we waited, as it progressed across my chest and down my abdomen. I began to experience increasing pain and swelling and began having problems swallowing, leading to several endoscopic dilations. It was all terrifying.

I had a consult with my oncologist the first week of May to discuss the test results and next steps. Because of the coronavirus, only patients were allowed in the cancer care facility, so Steve could not accompany me. I shook with anxiety. I can always tell if the news will be good or bad by my oncologist’s demeanor when he enters the exam room. That day he entered smiling and appearing almost…chipper? Steve was on speakerphone. “You seem cheerful,” I said to Dr. K. “Why are you so cheerful?” “I am,” he replied. The FDA, he said, had just granted expedited approval to a targeted-chemotherapy drug that had been in clinical trials for the treatment of advanced triple negative breast cancer. The approval had been given on April 22nd, little more than a week prior. It was particularly miraculous news given that the test results we’d been waiting on hadn’t turned up any good options. But I could start the targeted chemo drug sacituzumab govitecan-hziy, which they’d come to call “Sasquatch” acround the office, within the next two weeks.

Finn and Herry

My first dose was on May 20th, coincidentally the day Steve and I adopted two black-and-white kittens who we named Herzchen (German for “little heart,” as he has a heart-shaped spot on his back) and Finn (after Huckleberry, as Finn is a bit of a rogue). Herry and Finn have been good medicine, too. I’m still receiving Sasquatch, which has a two-week on, one-week off dosage schedule. It can be a beast, as it impacts three out of four weeks every month, but the side effects are fairly predictable, so I’m slowly learning to work with the uneven patterns of my days. Treatment day is always rough; I’m at the cancer center at least 4 hours and receive 7 drugs alongside Sasquatch to help with side effects. I usually feel pretty crummy that evening as my body processes the influx, then I’m powered by steroids the day after, have two down days, and then start to feel good again.

It’s a lot to manage, and I’ve lost all my hair again, including my eyebrows, which I really miss. But Sasquatch seems to be working, and every day it gives me is a gift. Conventionally, metastatic breast cancer cannot be cured, only treated into remission or no evidence of disease (NED). While that is technically still true, new targeted treatments like Sasquatch and the ongoing development of various immunotherapies are changing the game so quickly and dramatically that we simply don’t know what the future holds. Cancer, like HIV, is becoming something many people live with long-term, managing it rather than eradicating it.

It’s not easy to adjust to the idea of chronic illness, or to live in a space of such deep uncertainty, and the mental and emotional work it requires is one reason it’s taken me so long to write publicly about my experiences. I remind myself that we all live with that uncertainty every day, even if most don’t have constant reminders of it. And COVID-19 has now shifted mortality to the forefront of many people’s experiences. The pandemic has added a whole other layer to my own processing, but that’s another essay for another day.

Celebrating our fifth wedding anniversary on Ocracoke

I have several things going for me—the cancer, though it’s metastasized, is still pretty much contained in the lymphatic system. The science keeps staying just one step (one week!) ahead of me, and new treatments keep emerging. I have an incredible support system and one heckuva smart medical oncologist heading up my health-care team. All things considered, I feel good. I’m cuddling kittens, making art, and writing again. Steve and I celebrated our fifth wedding anniversary in September with a trip to the beach, and I’m on sabbatical currently and finally getting rolling on some creative projects. It’s not always easy, but it’s a beautiful life.

I haven’t, at this point, decided on a regular blog schedule, and I’m cutting myself some slack on that “writerly” thing.  I hope to post again soon. Until then, be well, wear your mask, and safe travels through this unpredictable world.

Getting some love from Herry

What We Talk About When We Talk About Cancer

The phrases are familiar: “Fight like a girl!” “We can beat this disease.” “Warriors in pink!” When we talk about cancer, the language of battle is so commonly invoked that you almost don’t register the underlying metaphor unless someone points it out. I have myself, more than once, referred to “kicking cancer’s butt,” and that’s felt reasonably accurate as a description of my attitude. Those rogue cells really aren’t welcome to keep hanging out in my body. In fact, I’m very happy to report that, according to a recent mammogram and ultrasound, they’ve been all but banished, the cancer shrunken to nothing or near it. Woot!

753_breast-cancer-fight-like-a-girlStill, as surgery looms on the horizon, I’ve grown more aware of how the language of aggression, while ostensibly empowering, also pits one against one’s own body in some curious and distressing ways. My sister-in-law Lisa, a survivor, mentioned her discomfort with this language shortly after I was diagnosed. Susan Sontag, in a 1978 essay entitled “Illness as Metaphor,” describes the dilemma: “The controlling metaphors in descriptions of cancer are, in fact, drawn…from the language of warfare; every physician and every attentive patient is familiar with, if perhaps inured to, this military terminology. Thus, cancer cells do not simply multiply; they are ‘invasive’” (714). The language surrounding treatment has a similar inflection: chemotherapy is “chemical warfare, using poisons” that aim to “kill” (715).

The “military metaphor in medicine” extends back to the 1880s in reference to bacteria, but as Sontag points out, “talk of siege and war to describe disease now has, with cancer, a striking literalness and authority. Not only is the clinical course of the disease and its medical treatment thus described, but the disease itself is conceived as the enemy on which society wages war” (716). The catch is that both attack and counterattack aren’t “out there” somewhere; they take place within us.

Breast Cancer Cells
Breast Cancer Cells

After watching the powerful documentary Embrace earlier this week, a film that asks hard questions about why so many women hate their bodies, I was reminded that most of us don’t require a cancer diagnosis to declare war on all or part of ourselves. It’s made me think about the power of the language we use to describe our relationship to this illness, how it affects my ability to make peace with the changes coming to my body. Cancer cells threaten my health, and I want them gone—but there’s no way to separate them entirely from myself, my body, my breast tissue, not without additional losses. Eliminating them has and will bring collateral damage. Suddenly casting those rogue cells as the “enemy” seems more complicated.

~~~

Personally, I’ve also struggled with the language of certainty that frequently emerges in conversations about cancer. While I know people’s intentions are to be supportive, bold declarations like “I know you will beat this” make me uncomfortable, as much or more because of the absolute underneath the “I know you will” as the aggression underscoring “beat.” Positive thinking is a powerful tool for healing, but I’ve found myself unwilling to make such absolute claims.

magic-8-ballThe main reason I resist is that none of us knows the future. That’s a fundamental truth. It isn’t that I don’t want to be healthy and cured—of course I do! But it feels like tempting fate to declare certainty in relation to a particular outcome; I don’t and can’t make predictions. I can only know the present.

And the present is complex and, frankly, not always a big shining ball of positivity. And that’s okay. Sometimes the insistence on “staying positive” feels less like encouragement than a denial of reality. I am thrilled beyond measure that the chemo shrank the mass. And: the bottoms of my feet are still numb with neuropathy, my joints still ache, and I still wear out way too fast to accomplish much of anything. As Buddhist nun Pema Chödrön writes in When Things Fall Apart, suffering is part of life. “Rather than letting our negativity get the better of us, we could acknowledge that right now we feel like a piece of shit and not be squeamish about taking a good look. That’s the compassionate thing to do. That’s the brave thing to do,” she explains. “We can drop the fundamental hope that there is a better ‘me’ who will one day emerge. We can’t just jump over ourselves as if we were not there” (40).

Absolute declarations that I will be cured stake my happiness on a potential event I can’t actually control. We’re so used to privileging “hope” as a good that it’s a bit of a mind-bender to consider a different perspective. But Chödrön points out that focusing on hope casts us into the future and the stories we tell ourselves about it, robbing us, ultimately, of the present moment (40). And since hope and fear go hand in hand, to live driven by hope is also to live with fear (in this case, of recurrence) hovering just underneath the surface. It seems healthier to stay focused on the here and now.

~~~

I do believe language has profound power to shape our experience, that mantras and affirmations can make a real difference. It’s been a challenge to find positive, empowering language beyond battle metaphors and absolutes, but here are some of the phrases I’ve been able to embrace:

This is survivable.

My body can heal.

I will be okay. I am going to be okay.

From a meditation CD a friend sent:

Thank you for teaching me to stop and listen. Thank you for reminding me what is truly important. You can go now. I know I have things to do, gifts to give, purposes to accomplish, and I require a healthy, working body for this.

And perhaps my favorite, from another (salty) survivor:

All I have to do is outlive the f-ing cancer.

~~~

mtnstar_wordsofencouragementIf this is my life (and it is) and if my life (like all our lives) is finite, and if I don’t know its deadline (and none of us does), then how do I want to spend it? Waiting and wishing for a different kind of life, a different kind of day, a “better” one in some projected future? Or do I find a way to accept where I am in the present, since that’s all any of us really knows or has?

At the end of the film Embrace, filmmaker Taryn Brumfitt offers this advice to her daughter: Focus on what your body can do, feel, accomplish, contribute. Don’t waste a minute being at war with your body. Embrace it.

Now we’re talking. Do it today.

The Waiting is the Hardest Part

I remember only a few details from my appointment with the breast surgeon the Tuesday following the MRI. I remember I wore a black t-shirt and a wraparound raw silk skirt I’d bought at a street fair some years back. She wore a simple black sheath. I remember her saying, “We’re going to get the scary stuff out of the way, and then we’re going to forget about it and move ahead.” Then she drew a picture to explain triple negative breast cancer and reassured me that the “Stage 3” was automatically determined by the size of the mass and the local lymph node involvement, that she hadn’t seen anything to make her think there was more going on. I remember shaking uncontrollably. I remember her asking, as she felt my breast, if it were possible the lump had been that hard and pronounced for long, her whispering in my ear as she hugged me good-bye, “We’re going to be hopeful and prayerful. Hopeful and prayerful.”

img_7893Despite her reassurances that there was no immediate evidence of metastasis, I would need a CT scan and a bone scan to be certain the cancer hadn’t progressed beyond the local nodes. I kept shaking, so the staff moved mountains to schedule the tests as soon as possible, three days away, that Friday. Results would likely come after the weekend.

The verb “wait” dates to circa 1200, “to watch with hostile intent, to lie in wait for,” hearkening back to the Old North French waitier, “to watch,” from the Old French gaitier, “watch out, be on one’s guard.” It takes a few centuries before the specific meaning to “endure a period of waiting” is recorded, in 1849.

Steve and I had been waiting to tell family and friends about my diagnosis until we had solid information, a sense of scope and plan. Plus, I knew announcing it to others would make it inescapably real. But it was becoming increasingly impossible to sit on the news. We were scheduled to travel to Georgia in a couple of weeks to help host my parents’ 50th anniversary party, and they’d begun asking questions about the specifics of our visit.

img_7896The noun weight comes from the Old English gewiht, “weighing, weight, downward force of body, heaviness.” The figurative sense of “burden” arrives in the late 14th century.

My parents were celebrating a milestone. I didn’t want to burden them with distraction and worry. But the uncertainties were becoming too heavy to bear alone. I remember crying through the phone call. I remember their calm, steady voices. I remember the sense of relief afterwards.

The use of the phrase “waiting game” is first recorded in 1835. Early on, it referred specifically to a horse-racing strategy for horses whose strength was speed over endurance.

Steve and I had also been looking forward to a trip to Folly Beach. We’d originally planned to leave the Friday the scans were scheduled, but we delayed our departure to Saturday. We’d make an overnight trip back to Roanoke on Monday to see the oncologist, then drive back to South Carolina and finish our week at the shore. It was the best compromise we could manage: we’d have our beach trip, and we’d have a plan.

The two days we spent at the beach not knowing whether the cancer had already spread felt like two centuries.

The evening we arrived, Steve left me to walk on the beach while he went into town to pick up some groceries. I strolled along the edge of the breaking surf, breathing in the salt air, gazing out at a distant horizon that made me feel both seen and insignificant. The sky was dark and heavy with clouds, a storm over the water. I turned around to see the sun beginning to set behind me. As it dropped behind another bank of clouds, it outlined one with a bright halo, its rays splaying dramatically across the sky. Light behind a cloud: was this hope?

img_7909The literal meaning of the verb “weight,” as in “to load with weight” is recorded first in 1747. Its figurative meaning, to load the mind with weight, appeared earlier, as early as the 1640s.

The side effects of chemotherapy are often debilitating and painful. Knowing your body will be permanently altered by surgery is disorienting, even devastating. But the waiting, all the waiting: for appointments, for surgery dates, for results, for reports, for recovery, for any piece of positive news. Ask a cancer patient, and I think many will tell you: all the waiting is the hardest part.

We got the call from the surgeon’s office Monday as we were driving back to Roanoke to meet with the oncologist: my scans were clear. You know your world has flipped upside down and backwards when “stage 3 breast cancer,” a diagnosis that left you shaking in fear just days before, takes on the modifier “only” and suddenly feels like the first good news you’ve had in weeks.

The nurse had tried to call with results late Friday afternoon. I remembered: I’d been on the phone with a delivery company when an unknown local number rang through. I’d started to hang up to answer it, but I couldn’t get a word in with the woman talking furniture. When I checked voice mail afterwards, my phone said it was full, no new messages.

The sense of “wait” meaning to “remain in some place” is from the 14th century.

img_7900-editedGiven a choice, I would not have elected to suffer through those two days of waiting and wondering. But it threw my perspective into sharp focus, gave me a fierce appreciation for the beauty all around me: the gritty give of warm sand under my feet; the spicy bite of fresh shrimp cooked with Old Bay seasoning; the constellation of freckles on my husband’s smiling face. And the sun shining out from behind a darkened cloud.

We’ll wait again, and again. And while we do, my heart breathes every gorgeous moment.


All etymological references are adapted from the Online Etymology Dictionary. Thanks to Tom Petty and the Heartbreakers (via Steve) for the title inspiration.